My Symptoms & Diagnoses

I drew up a list of symptoms to give to the Immunologist when I had my mast cell appointment and thought it might provide useful information to put online so that you can compare your symptoms to mine.

As I have 3 illnesses it’s impossible to tell which symptom is a result of which disease as many overlap, so you’ll see in brackets which illnesses share each symptom. Having reviewed the list of symptoms it is, quite frankly, a miracle I’m still standing 😉

Post exertional malaise, following even mild activity such as getting dressed or showering.(A diagnostic criteria for M.E.).

Severe and chronic fatigue, made worse by activity, both mental and physical.
(A diagnostic criteria for M.E. and a symptom of Ehlers Danlos Syndrome).

Widespread, chronic muscle and joint pain and stiffness, made worse by physical activity. Pain is burning, stabbing, electric shocks, stinging, aching and affects muscles, skin and nerves.
(common in Ehlers Danlos Syndrome but also a symptom of M.E. and MCAD).

Widespread muscle spasms, often after eating.
(common in Ehlers Danlos Syndrome, twitching is seen in M.E., but after eating ?MCAD).

Congenital Dermographism.
(MCAD).

Intermittent outbreaks of hives on buttocks of unknown trigger. Lasts several weeks then disappears.
(MCAD).

Generally mildly itchy skin and scalp.
(MCAD).

Allergies to just about every drug available if taken orally or inhaled (see my Drug Reactions post). No reaction to topical medications. Unable to drink alcohol.
(MCAD. Alcohol intolerance and drug intolerance also common in M.E.).

Problems maintaining even body temperature. Night sweats. Sweating after eating. Being cold when other people are warm.
(can be symptoms of M.E.).

Congenital Restless Leg Syndrome.

Constant pins & needles in feet and hands of 15 years duration. Also intermittently in anal area/buttocks after eating.
(Paresthesia from Meningitis. Eating ?MCAD).

Chest and facial flushing when hot, excited or nervous. Also following even small amounts of alcohol. NOT brought on by sunlight. Does not itch.
(MCAD).

Spontaneous bruising.
(a diagnostic criteria for Ehlers Danlos Syndrome but also seen in MCAD).

Dry, scaly skin on knees and shins. ME specialist confirms this is not psoriasis, but gives no explanation as to what it is. Not helped by moisturizers or over-the-counter steroid creams.

Chronic low-level depression. Intermittent anxiety, usually following eating. Also periods of mild euphoria for no apparent reason.
(all common in MCAD).
Otherwise a generally positive outlook, bubbly personality, sociable, outgoing, not a worrier.

Partial dislocations of both small and large joints following minimal or no trauma.
(Ehlers-Danlos).

Ligament sprains, strains and tears following minimal or no trauma.
(Ehlers-Danlos)

Alopecia (hair loss).
(MCAD)

The above symptoms are those I currently suffer from. However, over my 19 years of illness I’ve also had:

A-typical seizures, which I now think were either Seratonin Syndrome due to the drugs I was on or a-typical Oculogyric Crisis in reaction to the drugs I was on – both of which could have killed me.

Myoclonus, which were so severe my legs would jump literally 12 inches off the bed.

Outbreaks of goosebumps down the backs of my legs for no reason whatsoever.

An intermittent stammer. Sometimes total lack of speech.

Partial and intermittent paralysis particularly in arms.

Inability to sit, stand or walk due to profound muscle weakness.

Hands turning inwards from the wrist. Feet turning inwards from the ankle. Loss of motor control.

Inability to chew or swallow solid food.

Extreme sound, light and touch sensitivity.

Moderate chemical sensitivity.

Feeling like my feet were made of broken glass, which made walking or putting on shoes horrendously painful.

Almost total insomnia, which meant no cell renewal. Hair fell out in handfuls and skin cracked and peeled off like sunburn.

Grade III Anaphylaxis after eating.
(MCAD)

Most of the symptoms in this later group (apart from the anaphylaxis) all point towards being neurological in origin and followed my contracting Meningitis. However, they lasted for 10 years! MRI scans, ECGs and blood tests all ‘normal’. Makes me wonder if they just weren’t looking for the right thing, because if it looks like a duck and quacks like a duck, chances are……it’s a duck.

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55 thoughts on “My Symptoms & Diagnoses”

thank you for sharing this journey. i dont know how there are no comments on here, and i’m not sure how i found you, but i’m happy i did, and will be following you as often as i can. (i can’t find the date this was written, but i see all posts are from this year.) ♥

Hi, thanks for the comment and I’m glad you’re finding the blog helpful. It was only started in April 2013, so yes all posts are from this year. Not sure why I don’t get more likes and comments, because I’ve had *thousands* of visitors from all over the globe! Maybe they don’t like the blog, or just can’t be bothered to click the Like button?!

I see you have EDS and MCS. I’ve been diagnosed with MCS but know the diagnosis is wrong – I definitely have Mast Cell disease of some description, it’s really quite common in EDS! Some researchers in Canada are collecting data to try and work out why.

If you ‘follow’ the blog you’ll be emailed any new posts – saves you having to keep checking back in x

I have EDS and MCAD. My dad and both sisters have EDS. My MCAD always led to severe allergies to almost any possible airborne allergen. But 6 years ago I survived sepsis. Now all the things that I used to be allergic to give me anaphylaxis. I can’t ever go outside because being around grass or trees or plant life shuts down my airway. I also can’t be within ten feet of anyone who owns a dog or a cat because that also causes me anaphylaxis. My world has become so small. Is there something I could take to actually stabilize my mast cells so I stop having cascade effects every time I’m around an allergen? I just want my life back. Any advice you could offer would be amazing. Thank you.

That sounds really scary and I’m so sorry you’re reacting this badly. Unfortunately I have no medical training and it would be irresponsible for anyone who doesn’t know you or have access to your medical records to try and advise you on something so serious.

How do you know you have MCAD if you don’t mind me asking? If you’ve been diagnosed by a specialist are they not offering advice? There are several drugs, and drug combinations, which may help but they need to be prescribed by a Consultant who specializes in mast cell disease and then you need to be monitored. I doubt over the counter drugs like Benedryl, or the Zantac/Zyrtec combo, are going to cut it if you’re reacting so severely.

I appreciate that if you can’t leave the house it’s probably impossible to travel to see someone, but have you tried a phone or Skype consultation to see what a specialist suggests? What does your GP say?

HI Rachel,
My name is Lyuba and I also suffer from hyper reactive immune system. Last December I was reacting not only to foods, various allergens, but also to mildest stress. My visits to the doctors became torture. My hands and face within minutes were becoming red and swollen and my airways constricted. I have requested a co-amoxiclav prescrition from my pulmonologist which strangely helped dramatically with severety of my symptoms. What is interesting is that you mention sepsis. Do you know what caused it? After years of investigation I was found to have a bacterial infection – yersinia. Now I strongly suspect that the strain was pseudotuberculosis. This is a rare infection which can result in your immune system not being able to respond to infections properly and at the same time over reacting to practically anything causing allergy like symptoms and anaphylaxis. According to some studies the immune system can be ”recalibrated” with the careful use of antibiotics.
My main symptoms to start with were feeling incredibly ill, skin reactions, extreme fatigue, feeling sick all the time, pain in terminal ileum, joint and muscle pain, facial swelling, hair loss, POTS…. the list is endless. I was diagnosed with Crohn’s, but the treatment had little or no effect. My daughter had similar symptoms, but mild apart from extreme fatigue. She went to an art gallery recently where she fell asleep. I strongly believe that our symptoms were triggered by bacterial infection Yersinia which we probably contracted through either food or water. 80% of people with ME or chronic fatigue syndrom believe that their condition was triggered by a tummy bug which in most cases was never investigated.
Testing for TOTAL Yersinia antibodies in my experience is important. It costs £68 from http://www.bloodtestsdirect.co.uk
The presence of ANY number of antibodies suggests either current or previous infection unless the sample was crosscontaminated with Brucella. I hope this helps.
All the best to everybody.
Lyuba

Lyuba, can I just ask where you’ve got the statistic that “80% of people with ME or CFS believe their condition was triggered by a tummy bug” from? Having spent 14 years on the board of a national ME charity I didn’t find this to be the case.

Hi Jak, a tummy bug is the wrong wording. Sorry about that. What I meant was that a very large number of people with CFS can pin point the exact time they became ill often following an infectious illness with digestive symptoms. I can not remember where exactly I got that info. I believe there was more than one source. I wrote once to a possibly a professor(?) from the UK specialising in ME in response to his article regarding this condition. So he could have been one of the people that provided that info. Another one again possibly is Dr.Montoya.
Once again, ”tummy bug” was an unfortunate choice of words. I meant an acute infection like illness with often digestive symptoms.
I don’t have the time right now to look for the exact source of this info as I just collected our poor dead guinea pig from the vets which will need burying and my son is likely to be very upset. Oh, the joys of life!
The overall point I am trying to make is that a serious malfunctioning of the immune system can result following an infection. Yersinia, in particular pseudotuberculosis, is a very rare infection that is never tested for, but can have such devastating changes on the immune system.
I’ve had 3 or so years when I literally could hardly get out of bed, yet all the blood tests were normal! I would have been ok with having a cancer diagnosis. Anything. All I wanted was the answer. I still want these answers and am probably clutching straws with this bacterial infection, but it was the only positive test we’ve had that could potentially explain everything. The rarity of it suggests that it might be overlooked in testing.
All the best to everybody!
Lyuba

Hi, looking through your list of symptoms it is very similar to mine except for the hypermobility of joints but perhaps that is yet to come, atm to dry my hair, which is long, I have to put a bandage support on my elbow and rest my arm on a pillow on the dressing table else the weight of the hairdryer causes pain in my elbow and tendons for a week after. How did it start with you please?

Same as you, I eventually came across MCAS, not diagnosed but suspected histamine and sulfite intolerance by an NHS immunologist. I’m at the end of the line for any further help there though, my GP has referred me to a different allergy outpatients dept for- I don’t hold much hope.

Do you mean how did I start with Ehlers-Danlos or M.E.? Both can cause severe muscle fatigue and pain. You’ll find more about how it all started for me if go to the My Story tab in the menu.

EDS is something you’re born with. I’ve always been hypermobile (“double jointed”) – it’s not something which develops, though many people do tend to get less hypermobile as they get older. First started with pain aged 11 and been in pain ever since

You can’t get diagnosed with either hEDS or cEDS without hypermobile joints (which isn’t the same as being flexible – these days I’m stiff as a board!). There are sadly lots of diseases which can cause pain and ligament weakness – you’d need to see a Rheumatologist well versed in EDS in order to get connective tissue disorders ruled out and he may be able to tell you what else it might be.

M.E. started with a tummy bug when I was 26 – “if you have M.E. you know about it” was told to me by a Hospital Consultant and though I thought he was being patronizing at the time I actually think this is true. I’ve felt ill and weak every day of the past 25 years 😦

Getting help for MCAS in the UK is almost impossible. Most end up paying a fortune to see Dr Seneviratne in London privately. Mast Cell Disease can cause ligament weakness and pain – he knows all about that.

i’m starting to put the dots together, but my kids and i were chemically poisoned big time by living in what we found out to be an ex meth lab, it had a gas leak (monoxide poisoning) and toxic mold. 3 months in that house destroyed us for 2 years. this was 2 years before i started having problematic symptoms of EDS. it’s an insane and long story, for sure, but i truly believe everything has to do with our adrenals (and our guts). mast cell disorders, included. MCS and allergies are basically a ‘reaction’ to SOMEthing our brains perceive as a threat, thus everything seems to be centered around our amygdala freaking out.
and if we can control that, then everything else in our bodies (as far as reactions are concerned) should also be under control. helping our severely exhausted adrenals worked well for us, but then our living situation changed and our stress became uncontrollable, as did our reactions.
but i also feel that we may not have gotten so sick from the chemical bombs if i/we didnt have EDS and our adrenals were shot. (i also had epstein barr as a teen.)
ugh… it certainly is a constant learning journey. i have never believed in western docs, but i thrive on the research and rely on them as diagnosticians and the rest is up to me. having come from an alternative medicine background, it’s a mjuggling act to incorporate one with the other, while keeping it ‘real’. ya know?
so keep blogging, because we’re reading (obviously), even if those weird/shy people don’t comment.
;o)
denise
i started a FB page by the same name as my twitter, if youre interested in my crazy-assed life.

Too tired to leave much of a comment at this moment…which I know you’ll understand. But, I have enjoyed reading your blog – and have much in common. I hope to be back after recovery from an upcoming surgery. Thanks for your postings – every little bit we can do to help and support one another…the better. Sincerely, Sherry

Your symptoms are also listed as the many manifestations of Celiac Disease.
EDS, MCAD and HIT are also associated with CD. There is research on the association
of Cd and multiple AI conditions. They often go hand-in-hand.

Your continued GERD is likely not improving even with medication because, quite possibly, you are consuming gluten. It will not change; in fact, it could very well be fueling your inability to
regulate histamine. There is research that discusses how the use of NSAIDS and acid reducing drugs compounds the problem of insufficient DAO.

As I read your list here (and your other blog posts) I filled up with tears because you sound exactly like me before diagnosis: years of symptom-treating by doctors who failed to diagnosis the underlying cause: Celiac.

Please, be tested for celiac and even if the test is negative, please understand that non-celiac gluten intolerance can cause all the symptoms you describe here, including the urticaria.
Just a suggestion from someone who walked (no, dragged myself around) in your shoes
for many, many years..
Celiac almost killed me, but my recovery is amazing to anyone who saw me just 3 years ago.

I am not a doctor either, but I am a celiac advocate and your symptoms scream gluten intolerance to me. IMHO, offered with compassion and a wish for you to feel better.
Take care!

I truly appreciate your comments and your concern for me. The trouble is I’ve had a stomach biopsy for coeliac and it was negative. All my blood tests also are negative, my skin prick tests negative for gluten allergy, and I’ve even had bowel inflammatory markers done and they were negative. I’m fairly sure I don’t have coeliac disease.

I’ve gone gluten free twice before in my life and neither time did it help my symptoms in any way. I’m also currently trying a gluten free diet, yet again, as so many people go on about it to me, but so far I’m seeing no difference whatsoever – when I’ve been gluten free for 6 weeks I’m going to do a blog post to say if it’s helped or not (trust me when I say I hope it does help!!). However, I’m currently back to having awful asthma-type chest tightness and am coughing again, which had gone away. I also still have hives and heartburn and that’s while on a gluten-free diet 😦

I haven’t taken any drugs, including NSAIDS or any painkillers, for 10 years now as they cause mast cell degranulation. I’ve also only been on acid-reducing meds for 6 weeks, yet have had heartburn for 8 years. So I don’t think the research you quoted applies to me really.

I’m convinced I don’t have excess stomach acid. I’m convinced I have a hernia caused by my Ehlers-Danlos Syndrome (they’re extremely common in connective tissue disorders), which is allowing the normal acid in my stomach to re-gurgitate into my gullet, hence the heartburn. No diet will help my EDS sadly.

Hi, I must have been trying to connect the dots like Irishheart. We read frequently on glutendude and recognize her from her participation there-which is wonderful. Celiac Disease is not an allergy. Stomach biopsy is not involved in testing. Endoscopy of small intestines is generally done along with antibody testing,and you have to have been eating wheat to have accurate readings.My husband has Celiac Disease and I went on the gluten free diet for life with him and we are slowly getting somewhat better. (All our issues too lengthy to list now.) He is still also having some issues and that’s how I got here. I also have hyper-mobility of my joints and have had a hip replacement and was considering ankle replacement. My ankles have been getting a bit better-hoping it continues. Also have the foot issues that sound like yours. Had to have orthopedic shoes as a child and it did not help. As I look back at all our family diseases-mostly autoimmune I am starting to see the connections. My mother died in 1985 of adenocarcinoma of the intestines and had suspected lupus and collagen disease, heart problems, among many other problems with allergies and anxiety disorder. His mom has gone for so many tests and has many symptoms of Celiac disease too yet states “wheat doesn’t bother me”. My husband is 66 and I am 55. He had migraines for 40 years. they went away in a week or less of gluten free diet.He (my husband also has Hashimoto’s thyroiditis. We were told “don’t eat any wheat/gluten. At first this sounds like “ok, I can do that” but wheat is in everything (almost) and how we got here is he and I still have foods we are reacting to and histamines is probably part of the equation. He is a wheat micrometer, just a crumb or less will set in motion all the symptoms coming back (for weeks) I and he have many high histamine foods we react to. Food allergies (especially to high histamine foods) hives at times in our lives and heart palpitations, breathing irregularities, rashes, even anaphlactic-shock type happenings to name a few. I’m trying to nutshell this (almost to difficult to do in a few words). These other conditions often run with Celiac Disease. The many manifestations of problems with wheat are not all intestinal. Some have mainly neuro symptoms, or skin symptoms etc. I think Celiac disease can be missed way too often by many Drs. The testing is still not so good, many of the tests are done positive or negative only without the possible variables even being looked at. Gluten free almost three years now and still learning about things like you have here-cross reactive foods and other issues. Gluten free is every micron out of your diet and this is critical to say the least. You cannot toast a piece of gf bread in a toaster where wheat has been. Set us back many times. Have to replace cookie sheets because of those brown areas that are the old burnt wheat, cutting boards, rolling pin, etc.It doesn’t wash off of these things. Finally going to throw out our waffle iron (didn’t use it much since going gf)-but know we were glutened by it and there is no way to completely clean it of all the microns of old wheat still present. Some pot and pans can harbor it. Anything cast iron must be scrapped! So I hope in your trying the gf diet again you will be armed with all the knowledge that that entails-difficult as we are still peeling back the layers that keep presenting themselves-a learning curve for sure. Also all meds must be gf. Have to call the company and ask (Drs don’t know) They say that adults can take many years to recover from the damaging effects from wheat and that some of the associated disorders never completely go away. But hopefully we will not develop new ones and have increased health from not eating wheat.

I did the follow up post at the end of November https://mastcellblog.wordpress.com/2013/11/26/gluten-free/. I had the worst month all year on a gluten-free diet (the experiment lasted 7 weeks in all). Went back to eating gluten and after a couple of weeks started to feel much better. For me the topic of gluten is closed.

That occurred for me on Gluten Free trial for a month last fall. I had severe anaphylaxis with the second phase lasting for days. My diabetic neighbor gave me a regular sugary donut after she tested my sugar levels which were below normal and within several minutes, I felt better.

Spent a while on the celiac road, but I dont think its for me. The histamine theory really fits, so I want to try it and check out an ehlers danlos diagnosis. Byron Hyde has commented on a possible connection or similarity. I have been tested for high stomach acid but it was low, and the ME Clinic said they were finding more people on the low side rather than the high. Maybe this fits with not having stomach acid defence. But what do I know? Im no expert, just trial and error and hope.
Julie.

People with mast cell disease usually have high acid. It’s the mast cells in the stomach which produce stomach acid for digestion. In MCAD the mast cells are over-active and you therefore get over-production of acid rather than under.

In my case I have the double whammy of too much acid, then a lax stomach valve/hiatus hernia due to my EDS, which allows all this acid into my oesophagus, throat and mouth.

Of course in people who don’t have mast cell issues the situation will be totally different. As you say, it’s all a learning curve and we’re all individual with differing issues.

Hi Jak, what an amazing blog. Thank you. My two sisters, my son, and I all have EDS with histamine issues, all to varying degrees. I also believe my mother and father probably had the same issues, to a milder extent…so as their offspring we got a double whammy to different degrees. I seem to have gotten “it” the worst; I have the scoliosis, bruising, hypermobility, bunions, constipation, lifelong insomnia, lax ileocecal valve, dermographia…so many things you have listed that I almost had to giggle. Mine got very severe at peri-menopause, with the myoclonus, burning hands and feet, etc. that you mention in your blog. I have recently discovered DAO after wondering for so many years why Benadryl solved so many of my issues–but I hated the sleepiness and headache and dehydration. The DAO seems to be helping a lot, especially with the insomnia.

I am commenting here for two reasons: first, to thank you for this blog. Second, I wish to reinforce your assertion to the celiac sufferers that EDS IS NOT CELIAC DISEASE. As a matter of fact, I have discovered that homemade white bread (white flour, salt, yeast, water) is one of the rare things that give me no issues at all…as a matter of fact…and I KNOW THIS SOUNDS LIKE SACRILEGE…it actually makes me feel good. There…I said it. It doesn’t constipate me, cause me restless legs, give me a headache or anything else like many other foods do. The worst thing it does is put pounds on. Otherwise, it is one of the rare blessed foods I can actually eat with no problem at all. All the gluten substitutes give me issues: white rice flour, almond flour, etc. ad infinitum. EDS and mast cell fragility is NOT UNDIAGNOSED CELIAC. I have had celiac tests, too, which were negative.

There were four things that I have that I wonder if you do too:
1. Fructose constipates me terribly and makes me emotional. My sister has the same problem. Fruit causes some kind of blockage and swelling that constipates us for five days or so. I have looked into Fructose Malabsorption on the web and have found at least one other known EDS sufferer (and her family) posting there. My mother had fits of rage sometimes and I’m pretty sure this was her issue.

2. Yellow teeth! I have read this is an EDS issue. My mother practically disowned me because my teeth were yellow, no matter how much brushing, flossing, dental cleaning, etc.

3. I don’t at all mean to insult you…so please take this as a sincere inquiry…but in the picture of your ankles, I noticed that they looked a lot like mine. Even though I am small framed, I have large ankles, especially from a side view. I wonder if nature fortified our ankle size because it screwed up our collagen? After all…we have to stand up to survive! Is that just a coincidence, or is that an EDS feature?

4. Do you know your blood type? Are you a non-secretor? Don’t know if EDS people have that in common, either. I am mostly of Northern European descent, with ancestors from England, Wales, Scotland, Lapland, and North Africa. I’ve always wondered if EDS was an adaptation to living in a very cold climate. Perhaps our collagen stays more flexible in freezing conditions? Just speculation. I’m an O positive non-secretor. My mother was A negative, probably non-secretor.

I’ll stop talking now! Again, thank you for your story. You’re helping all of us with your willingness to share!

I’m so glad you’re finding the blog helpful, but really sorry to hear that so many of your family are affected 😦 It’s so refreshing to hear someone say that coeliac disease is not at the root of every disease known to man! Like you I feel well on bread in particular and it’s one of my ‘safe’ foods.

I’ve read about people with fructose malabsorbtion – sugar and fruit seem to have little affect on my symptoms that I can see, so it’s not an avenue I’ve ever pursued. I’m glad you’ve found that avoiding fruit in particular helps you though.

You made me LOL re my ankles 😉 No-one’s ever said they were wide before, and it’s not something I’ve noticed myself, but then I don’t tend to look at my ankles much! Although I’m petite in build I have very short but wide feet, hands and fingers – just genetics I assume. I guess by sheer volume of numbers some EDSers are going to have similar traits, though wide ankles are probably found in the healthy population too in the same numbers.

I don’t know if I’m a non-secretor (don’t even know what that is!) I can tell by the fact you’ve raised this that you’re in the USA and not Britain though, as no-one here would know that – you have access to a LOT more tests there than we do here.

Very tired so must close, but thanks again for taking the time to comment and you’ve given me some food for thought 🙂

Very informative for me as I’m having much of the same symptoms without a diagnosis. I’ve seen the best drs and had muscle biopsies (the thought was maybe it was mito) but still no answer. I’m 48 and have an 18 yr old daughter with most of the same symptoms you list and no diagnosis. My health is deteriorating quickly and have even tried a round if IVIG out of desperation with no luck. I need to explore this Mast cell possibility in more detail. Thank you for sharing and I hope you are feeling better these days.

Sorry to hear you’re struggling with diagnosis. Hardly anyone is looking for mast cell disease and it often takes years, decades in many cases, for it to be considered. There is plenty of information on the Genetic Alliance Rare Diseases forum https://www.inspire.com/groups/rare-disease-and-genetic-conditions (do a search for mast cells) and someone may be able to help point you towards specialists to see in America (I’m in the UK so don’t know much about who to see in the States). It’s really important to see one of the top MCAD specialists – I was told by regular immunologists/allergists that I had no mast cell issues because my tryptase was normal, but tryptase is always normal in MCAD and you have to test for other mediators such as heparin, PD2 and n-methylhistamine and in a very specialized way for anything to show up. Good luck. Jak x

Loving this blog as we are going through diagnosis for my daughter at the moment. Saw dr s yesterday for first time. Reading about your symptoms did you have spells of paralysis when on the meds that can cause serotonin syndrome, and the myoclonus maybe? We’ve been through all that and we’ve learnt so much about SS from one of the foremost experts in the world so fee free to contact me x

Really pleased my blog is helpful but sorry to hear your daughter is having to go through all this.

I can’t get my doctors up here interested in my drug reactions, but I’m convinced the anti-depressants gave me seratonin syndrome – I’m lucky to be alive really! SS doesn’t explain my other drug reactions, but it definitely fits with what happened when taking anti-depressants for my insomnia & pain.

Hi, I first ran across the pic of the bump on the finger, which reminded me of mine… turned out an elisaact.com allergy test (wonderful) identified things I had no idea I was allergic to. Turns out I got that “arthritis” (per my doctor) only when I use a steel wool soap pad like SOS or Brillo. Your list of symptoms also looks so much like Lyme and Bartonella disease, which are VERY poorly diagnosed, the tests are inaccurate for numerous reasons, but treatment can help. Please see http://topdocumentaryfilms.com/under-our-skin/ , also http://www.lymedoctor.com/index.html (he had it undiagnosed for years himself), and ilads.org. Too much info to share here, but those are excellent resources. People can have more than one condition. Good luck!

Thanks for taking the time to comment Kathy. I first got ill working on board a cruise liner, and as far as I know there are no ticks in the middle of the Atlantic ocean (no animals on board) so thankfully that rules out Lyme or Bartonella.

The lump on my sprained finger is most likely bursitis due to the injury. The other lumps are most likely ganglions which are common in EDS as they form on inflamed ligaments and joints.

No vaccinations before the cruise Catherine as I initially only travelled round the mediterranean. But if you read my ME Journey you’ll see that vaccinations for travel to Africa later led to me going from moderate to very severely affected. Jak

Hi, Just as an afterthought, you can get symptoms 1-4 weeks after a tick bite, (some speculate they may come from other bugs too) and they don’t have to come off deer, but can be carried by birds, rodents, rabbits, etc. I wonder how many other difficult to diagnose, or undiagnosed, infections like these are affecting so many when there may be hope for a cure with treatment. The tests are so poor for lyme, bartonella, babesia, erlichia… if you have antibiotics for anything (that also happen to treat those conditions), or use some of the many natural products that can help kill it off, and feel worse while you are taking it (they die, spitting out more toxins), but your symptoms are better AFTER the die-off clears out a week or so later… that could be a diagnostic tool. Igenix labs are good, also. If anyone looks into the links above, or lyme groups on facebook or such, you’ll see all sorts of health problems associated with more severe cases (and co-infections), so many spending years of seeing numerous doctors before diagnosis and improvement. Some may sound a bit crazy… but are true, and then again, it can get into the brain and cause symptoms too… Hope you are doing better or have found some answers.

Can you point me towards any any articles or studies on the link between EDS and Irritable/overactive bladder? I was recently diagnosed with EDS and I am certain that I have some form of overactive bladder. I live in the U.S. where doctors have less familiarity with EDS than in Europe so I’d like to bring some medical reference material to my doctor visit to attempt to identify the bladder issue. My primary care was perplexed and I don’t anticipate that the specialist will be familiar with EDS. I haven’t been able to find any articles or medical studies on the link. Thanks in advance.

When the neuro symptoms begin escalating, I too have all you’ve had. MRI, they say, showed nothing, but when I got my records I found I had a 10mm pineal gland cyst. Doctors in the US do not believe they are symptomatic so they never told me. These brain cysts have connective tissue as their outer layer. When mine gets big, I am so stupid, drunken sounding: slurred, studdered, and labored all at once. I do not know the month, eventually cannot even begin a sentence, POTS is crazy severe, hypothyroidism attacks me, cannot take the first step to walk a straight line. Eventually I know I am about to die from either heart stoppage or breathing stoppage. I go unconscious, have a stroke-like seizure, then awaken to see black blood in my arteries (hypoxia) and a couple years of relearning my vocabulary.
It is so hard to get the MRI at the exact right time when I am in this stupor to prove it is this cyst causing all the neuro problems.
Pineal cysts are very common. They are routinely ignored. I am chasing a hypothesis that EDS folks pineal cysts balloon up bigger. Anything above 5mm is considered rare by the “rare disease” docs…I forget their org’s proper name. The symptom list for large pineal cyst matches me EXACTLY when I am feeling dumb as a rock. These neuro decline episodes take about one year to go from feeling good to knowing I am about to die.
Has anyone read their own MRI results and found a pineal cyst during a time of massive neuro decline?
I think my cyst ballooning is what causes me to want to crack my skull open when a low pressure weather front is approaching too fast.
Anyone have this problem? Has anyone heard of large pineal cysts, tied to EDS?
I can have the cyst removed endoscopically, but fear dying on the table. None of the EDS docs in the US can tell me how dangerous such a surgery would be for an EDS patient.
Just wondering…
Deb

Hello
I can’t believe that I found someone who has this symptom.
Hands turning inwards from the wrist. Feet turning inwards from the ankle. Loss of motor control.
It has been so difficult to discribe this to doctors. They look at me like I’m mad. My experience with this is so painful. The muscles are like they are soaking in acid. My fingers start to tighten and pull together then I bend in at the wrist and then my feet start up. I have no control. What is this? Is this part of EDS?

This is not a symptom of EDS. It happened to me after I had meningitis during a trip to Africa and is usually indicative of a neurological issue – it is often seen after head injury. I’m amazed your doctors don’t take this seriously – I had all sorts of MRI scans etc. to rule out serious diseases, including things like Multiple Sclerosis (not meaning to frighten you because it turned out I didn’t have any of those diseases and the symptom was put down my M.E. which is a neuro-immune disease). It did thankfully clear up about 18 months after the meningitis, which had obviously damaged my brain in some way.

I’d suggest that when this happens you video tape it on your phone, then you can show it to the doctors and they can see what’s going on – referral to a neurologist would be the best option IMHO.

Hi Jak,
I want to thank you for your blog. I found it late last night. I’m going to enjoy reading the rest of it over a cup of coffee.
Quick history, these episodes started when I was 20. I had three major events over two years. I Went to a neurologist and they found nothing. They didn’t do any brain scans. I didn’t have any more until early this year. I’m 42. So it’s been awhile. My primary care and my Ciropractor has seen mild epsisodes. I think I will push for a neurologist visit. I very happy
Thank you so much.

Thank you so very much taking the time to comment. I’m well aware of your work and include various links in my blog posts. I wrote my very popular post The Canary based on your research https://mastcellblog.wordpress.com/2013/11/12/canary/ I’m trying, unsuccessfully so far, to get M.E. researchers here in the UK interested in studying mast cells in M.E./CFS.

I would like to thank you from the bottom of my heart for being one of only a handful of Doctors who are researching mast cell disease and trying to help patients. You are our hope for the future.

I am 57 years old and I have bad pain when I try to sleep it wakes me up I have 37 of the 58 symptom’s of mass call degranulation and the more I read the more
It sounds like everything I have my big
Joints hurts so bad at night is there ANY
MED’S That I can Take To Help me
CAN ANYONE HELP PLEASE.

Thanks for the comment though I’m sorry to hear you’re in so much pain. While I totally understand your desperation it would be irresponsible, and possibly dangerous, to offer you medical advice on the internet – we don’t know you or your medical history and none of us have any medical training.

If you suspect mast cell disease my advice can only be to try and get a proper diagnosis. You may have Mastocytosis, not MCAD, or you may have another condition altogether which causes joint pain. If you let me know where in the world you live I might be able to point you in the direction of medical help here in the UK or some forums which can help with medical experts abroad.

I’m sorry I can’t offer a quick fix but obtaining an accurate diagnosis is critical to getting the right help and treatment.

Dear Jak, my name is Lyuba. I also live in North west of England, Cumbria. I have found your website an invaluable source of information that I come back to frequently and would like to thank you for your commitment. I have struggled for years first to be taken seriously by doctors and now to actually get the correct diagnosis for myself and my children. I also have Ehlers Danlos and POTS, degenerative disc disease and what appears like arthritis and still undiagnosed issues with my bronhi, but I firmly believe that my main issue is to do with mast cells and high doses of antihistamines and the relief they bring seem to suggest I am right. I have not seen a mast specialist yet, and my tryptase level was 8. I have also been diagnosed with Crohn’s disease and so was my son who also suffers from EDS. After years of research I believe that MCAS is responsible for intestinal inflammation that in our case was diagnosed as Crohn’s. My 18yo daughter suffers POTS, digestive symptoms and extreme fatigue where she can sleep for 28 hours and still feel tired. There are weeks when she can only function for a couple hours a day.
I have now decided to get my histamine tested privately before I see a mast specialist. You had mentioned that when you saw Dr Seneveratne you had your blood and urine tested for histamine as well as DAO. Could you share if both blood and urine test showed similar results? I am planning on having blood histamine and DAO levels tested in London this weekend.
Thank you.
P.s.love your photographs, by the way. I have been practically bedridden for the last 5 years (although antihistamines are helping enormously recently ) and started to learn painting and photography as well.
Lyuba

Gosh, you really have a lot on your plate and I’m so sorry it’s been such a struggle to get help for both yourself and your children 😦

At my appt with Dr Seneviratne in London he arranged all the necessary testing. He only uses 1 Lab and has trained them specially to handle all the samples correctly (very important to get accurate results). He now also offers to send samples to America for Leukotriene testing (my friend had severe symptoms – histamine tests were normal, but her leukotrienes were sky high).

Things have changed in the 4 years since I had my tests done and it may be that things like Chromoglanin A and prostoglandins are now tested for (mast cells release nearly 30 mediators, so just testing for histamine can give a false negative result). I’m not sure how helpful my results are being so out of date but I had: plasma histamine (normal), urine histamine (normal), urine creatinine (normal), urine methyl histamine/creatinine ratio (high), DAO (abnormal), tryptase of 4 (very normal). Leukotriene testing wasn’t available then and even if it had been I couldn’t have had afforded it. Despite my largely “normal” MCAD results I was still diagnosed with “probable” MCAD by Dr Senevirate based on my history and symptoms and response to low histamine diet and antihistamines.

Floaters are common in the general population and aren’t specific to MCAD. If they get suddenly worse, or you have flashes of light in your vision, you should seek immediate medical help as that can be a sign of more serious eye problems.

Welcome!

Hi. Thanks for visiting my Blog. Posts are listed newest first, but if you’d like to start with my first rambling written in 2013 click here. I’m not a mast cell or EDS expert and have no medical training. I’m just sharing my own personal thoughts and journey. This isn’t a forum, more a diary, but polite, respectful comments & questions are welcome – click the ‘leave a reply’ link under post titles or scroll to the end of each post and use the comments box.

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